Papillary Renal Cell Carcinoma- Anyone Experiencing This, Is A Survivor? PART 2 - STILL GOING STRONG

ddt said:

Papillary RCC
Ruth, my husband's name is Don also and he has papillary with clear cell. He was diagnosed stage IV in December 2008 and it was in his lymph nodes. He tried Torisel which didn't work but has been working very well for a year and a half for a man with papillary where he went to receive the chemo. Don had ascites really bad. Was having about four to five liters a week removed. This is a very bad prognosis. He just started Nexavar a couple of weeks ago and the ascites has reduced unbelievably. The doctor had given him months unless we could get a chemo to work. This has given us hope which is what everyone needs. There is a clinical trial that is working really well for papillary patients. You can't have taken but one drug previously so my husband was not a candidate. You have to also have evidence that the disease has spread. Maryann tried to get into the trial also and was not able to because she had taken more than one chemo. It breaks my heart that she didn't survive long enough for that drug to be marketed. Two years ago there was no hope for these patients and now it's exploding. If we can just keep them alive long enough there are new drugs on the scene every six months it seems like. Afinitor is very similar to Torisel so we didn't try it since the Torisel didn't work. Avastin and Interferon are terribly harsh. I would get a second opinion. I just checked and the trial for XL880 or GSK1363089 as it is now called is closed but I had contacted a Dr. Logan in Indiana about the trial and really liked their approach. I didn't think the Nexavar would work because it seems more for clear cell so we are very excited to think that it is helping this much this soon.